parent involvement in end-of-life care and decision making
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2010
Parent Involvement in End-of-Life Care and Decision Making in the Parent Involvement in End-of-Life Care and Decision Making in the
Newborn Intensive Care Unit: An Integrative Review Newborn Intensive Care Unit: An Integrative Review
Lacey M. Eden Brigham Young University - Provo, [email protected]
Lynn Clark Callister Brigham Young University - Provo
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BYU ScholarsArchive Citation BYU ScholarsArchive Citation Eden, Lacey M. and Callister, Lynn Clark, "Parent Involvement in End-of-Life Care and Decision Making in the Newborn Intensive Care Unit: An Integrative Review" (2010). Faculty Publications. 5259. https://scholarsarchive.byu.edu/facpub/5259
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Parent Involvement in End-of-Life Careand Decision Making in the NewbornIntensive Care Unit: An Integrative Review
Lacey M. Eden, MS, APRN
Lynn Clark Callister, RN, PhD, FAAN
ABSTRACT
Survival rates for very preterm and critically ill infants are increasing, raising complex ethical issues
for health-care providers and parents who face the challenge of making end-of-life decisions for
newborns. The purpose of this integrative literature review was to evaluate parental involvement
in end-of-life care and decision making for their infant in the newborn intensive care unit. Findings
revealed that establishing good relationships and clear communication between health-care providers
and parents builds trust and eases stress placed on parents making decisions about the care of their
infant. Palliative care programs provide support for parents and facilitate their decision making.
Parents can be educated about how to communicate with health-care providers. Educating nurses
on how to provide end-of-life care may also help improve support for parents during this difficult
time. Additional research is recommended to examine parents’ needs during and after end-of-life
care decisions for their newborn.
The Journal of Perinatal Education, 19(1), 29–39, doi: 10.1624/105812410X481546
Keywords: newborn intensive care unit, parent decision making, communication, palliative care, childbirth education
An emergency cesarean surgery was performed at
27 weeks for the birth of a 700-gram infant with
intrauterine growth retardation. After 11 months
in the newborn intensive care unit and numerous
medical procedures—a patent ductus arteriosus
ligation, gastric tube placement, retinopathy of
prematurity surgery, necrotizing enterocolitis re-
pair, and a tracheotomy—the infant suffered car-
diac and respiratory arrest. He was coded for 20
minutes and was stabilized. Following an MRI,
the mother and father were informed the infant
had lost almost all brain function and was being
kept alive with the ventilator. After multiple
conferences with health-care providers and the
parents, a decision was made to remove all life-
sustaining procedures from the infant. The infant
lived for 14 hours. These were heartbreaking and
agonizing hours for the parents and health-care
providers, with everyone questioning end-of-life
decisions. The parents specifically requested cer-
tain nurses to be at their side. The infant died in
the arms of his mother.
End-of-Life Care in the NICU | Eden & Callister 29
Hospital staff gave the family a bereavement box
filled with their infant’s hand molds, pictures, and
clothing. The family also received information
about counselors and support groups. The parents
had a long road of grieving.
This scenario is not uncommon in the neonatal
intensive care unit (NICU). It raises many questions
about the procedures taking place in the NICU and
the support and teaching parents receive. Many
ethical issues are generated concerning the provi-
sion and the withdrawal of treatment for extremely
low birth weight or critically ill infants.
Of the 130 million babies born every year world-
wide, about 4 million die during the neonatal
period (United Nations Children’s Fund, 2007).
Of those births, 15% are born premature, 5% of
those premature infants are born weighing less than
2 pounds, and 75% of those infants will survive
(Muraskas & Parsi, 2008). Globally, 450 newborns
die every hour (Wallin, 2008). Most neonatal deaths
in the United States are low birth weight and
preterm infants (Mathews & MacDorman, 2006).
Seventy-five percent of neonatal deaths occur in the
first week, with the highest risk of death within
the first 24 hours of life (Lawn et al., 2006).
In 2004, more than 34% of all fetal deaths in the
United States occurred between 20 and 23 weeks
of gestation, and 50% occurred between 20 and
27 weeks (MacDorman, Munson, & Kimeyer,
2007). Rapid improvement in the health care of ne-
onates has led to an increase in the survival rates of
very preterm infants, also generally known as ‘‘mi-
cro preemies’’ (Arlettaz, Mieth, Bucher, Duc, &
Fauchere, 2005). Survival of neonates born on the
margin of viability has been continuously pushed
back to younger and younger ages. Neonates as
young as 25 weeks and as small as 750 grams are
routinely being saved. However, survivors often
have significant physical and mental impairments,
including cerebral palsy, blindness, and learning
disabilities (Robertson, 2004).
Before 1970, withholding treatment from infants
born with diminished capacity for interaction or ex-
perience was rarely contested (Robertson, 2004). In
1984, the federal Child Abuse Amendment (CAA)
became strongly protective of the rights and inter-
ests of the disabled and left little room for nontreat-
ment decisions based on quality of life or the
interests of parents. Whatever the extent of their
disabilities, all children were to receive medical treat-
ment unless they met narrow exceptions (Robertson,
2004; Sayeed, 2005). Resuscitating newborns born
under 750 grams and before 25 weeks poses a major
problem under the CAA. According to the CAA, all
viable premature newborns must be treated even if
they are likely to have severe physical and mental
disabilities. To conform to the CAA, many neona-
tologists were likely to resuscitate premature new-
borns regardless of parental wishes (Robertson,
2004; Sayeed, 2005).
According to the American Academy of Pe-
diatrics’ Neonatal Resuscitation Program Steering
Committee, the decision to withhold or discontinue
health care may be considered by providers in con-
junction with the parents acting in the best interests
of the child (Sayeed, 2005). The federal CAA rules
remove quality-of-life considerations and conflict
with the best-interests paradigm advocated by the
American Academy of Pediatrics Committee on
the Fetus and Newborn (1995) and Neonatal Resus-
citation Program (Sayeed, 2005).
Catlin (2005) found that physicians reported
resuscitating all neonates and later deciding whether
treatment exceeded the newborn’s ability to benefit
from treatment. It is more difficult to initiate
treatment and then withdraw than to make an
‘‘up-front’’ decision to withhold treatment. Con-
flicts between families and health-care providers
about whether to continue or withdraw life support
for critically ill infants are not uncommon and often
result from inadequate communication (Kopelman,
2006). Health-care professionals experience moral
distress and frustration when, due to demands of
families, they provide infants with treatment they
feel is inappropriate. This action results in needless
suffering in infants and the use of scarce and costly
health-care resources (Engler et al., 2004; Hefferman
& Heilig, 1999; Kopelman, 2006).
The emotional and financial burdens on the
family are often underemphasized (McGettigan, J.
Greenspan, Antunes, D. Greenspan, & Rubenstein,
1994). Parents are considered the primary decision
makers for their children, based on our society’s
moral and legal traditions that uphold the family
as the foundation of our values and beliefs (Stark
& Thape, 1993). The decision to withdraw life sup-
port is very painful, leaving parents with feelings of
loss, emptiness, guilt, anger, and pain. Health-care
Many ethical issues are generated concerning the provision and the
withdrawal of treatment for extremely low birth weight or critically ill
infants.
30 The Journal of Perinatal Education | Winter 2010, Volume 19, Number 1
providers feel helpless and a sense of failure as the
family mourns the loss of a child (Abe, Catlin, &
Mihara, 2001). It is important for health-care pro-
fessionals and families to engage in effective com-
munication and mutual respect during this highly
stressful, emotional period. There is growing rec-
ognition of the importance of palliative care for
the dying infant and the family. Palliative care em-
phasizes quality of life while alleviating the symp-
toms of medical conditions and their treatments
(Gale & Brooks, 2006; Sumner, Kavanaugh, &
Moro, 2006).
An integrative review by Ward (2005) explored
the ethical components to decisions made in the
NICU regarding treatment plans or research enroll-
ment. Ward focused on communication between
parents and professionals. Due to rapidly changing
standards for end-of-life care in the NICU, chal-
lenges to health-care providers caring for dying in-
fants and their families are also changing. Moral and
ethical issues related to decision making for infants
born on the margin of viability are becoming more
difficult. The purpose of the present integrative lit-
erature review was to evaluate parental involvement
in end-of-life care and decision making for their in-
fant in the NICU.
METHODS
An electronic search was done to identify studies
that included end-of-life care given to dying infants
and were published between 2000 and 2008 in the
following databases: CINAHL, Alt Health Watch,
Applied Science & Technology Abstracts, Health
Source - Consumer Edition, Health Source: Nurs-
ing/Academic Edition, MEDLINE, PsycARTICLES,
PsycCRITIQUES, PsycINFO, and The Cochrane
Library. The search terms used were ‘‘neonat* inten-
sive care’’ or ‘‘intensive care;’’ ‘‘neonatal and com-
fort care,’’ ‘‘palliat* care,’’ or ‘‘end of life or terminal
care’’; and ‘‘family involve*,’’ or ‘‘parent* decision
making’’ or ‘‘parents or professional-family rela-
tions.’’ The search was limited to data-based articles
published in English. Additional relevant studies
were reviewed based on an ancestral search. For in-
clusion in the critical review, infants in the selected
studies must have been admitted to the NICU or
pediatric intensive care unit.
RESULTS
The Table presents a description of the 10 studies in
this literature review. Five of the studies explored
parent involvement in decision making in end-of-
life care for their infant (Abe et al., 2001; Arlettaz
et al., 2005; McHaffie, Lyon, & Hume, 2001; Moseley
et al., 2004; Streiner, Saigal, Burrows, Stoskopf, &
Rosenbaum, 2001). Three of the studies explored
the effects of palliative care and how it influences
parents’ perceptions and decision making for their
infant (Carter & Guthrie, 2007; Lundqvist, Nilstun,
& Dykes, 2003; Pierucci, Kirby, & Leuthner, 2001).
The parental perception of withdrawing/withhold-
ing treatment was explored in two studies (Rini &
Loriz, 2007; Wocial, 2000). One study was per-
formed in Scotland (McHaffie et al., 2001); one
study was performed in Sweden in multiple neona-
tal units (Lundqvist et al., 2003); one study was
performed in Canada (Streiner et al., 2001); and
one study was performed in Switzerland (Arlettaz
et al., 2005). The remaining studies were conducted
in the United States. All studies examined, in some
way, parental involvement in end-of-life care of the
infant.
Parent Involvement in Decision Making in End-of-
Life Care
In the NICU, parents are often faced with the im-
mense, heartbreaking responsibility to decide to
withdraw life-sustaining treatments for their infant.
Similarly, health-care providers are confronted with
the ethical dilemma to continue or withdraw care of
critically ill neonates. These decisions are based on
future quality of life, severity of handicaps, and pro-
jections of longevity and often reflect the values of
parents and health-care providers (Moseley et al.,
2004). Shared decision making between health-care
providers and parents raises a number of trouble-
some issues. Health-care providers are challenged,
knowing treatment can be continued but question-
ing if it should be continued. Parents face the chal-
lenge of comprehending the medical information
provided to them and using the information to de-
cide whether they should allow their child to live or
die. From the parents’ perspective, the situation is
not necessarily about ethics but about making de-
cisions in the best interests of their child (Wocial,
2000).
Streiner et al. (2001) found that 64% of parents
agreed or strongly agreed that an attempt should be
made to save all infants regardless of birth weight or
It is important for health-care professionals and families to engage
in effective communication and mutual respect during this highly
stressful, emotional period.
An integrative review ofthe literature is a formof research in which pastresearch is systematicallyanalyzed and summarized togenerate new knowledgeabout the topic. Theintegrative literature reviewcan be used to evaluate thestrength of the scientificevidence, reveal gaps incurrent research, andidentify the need for futureresearch.
End-of-Life Care in the NICU | Eden & Callister 31
TABLESummary of Studies Reviewed
Authors Study Design Purpose Sample Findings
Abe, Catlin,
& Mihara
(2001)
Retrospective
chart
review
To examine the process of
ventilator withdrawal,
medication administration,
parental participation in
EOL decision making, and
support of the family
in the NICU.
18 infants died after
ventilator withdrawal
15 parents participated in
the decision to remove
ventilator support
(United States)
83% parents participated in decision;
ventilator withdrawal due to quality
of life and prognosis; parents
present at death. Parents received
support from each other and social
worker. No documentation of
emotional support given by nurses.
Three charts documented withdrawal
of treatment requested by parents.
One chart documented parents’ decision
to forego palliative surgery and
to allow their infant to die.
30% parents received support from
clergy and family members.
60% of charts documented providing
keepsakes for the parents.
Arlettaz,
Mieth,
Bucher,
Duc, &
Fauchere
(2005)
Retrospective
chart
review
To evaluate how EOL
decisions are made in
the perinatal center.
To analyze consistency
of decisions made with
the framework for
structured ethical
decision making.
199 neonatal deaths
(Switzerland)
79% of EOL decisions made according
to the ethical framework.
92% of cases involved the parents
in the decision; in all cases but
one, the parents agreed
with the decision.
In majority of cases, newborns died
in the parents’ arms.
Carter &
Guthrie
(2007)
Descriptive
survey
To study the current
documentation of NICU
palliative EOL care.
26 surveys
(United States)
Documentation of EOL care ranged
from excellent to poor, with
100% on pain management to
54% on spiritual support.
Staff and trainees reported greater
awareness of issues important to
EOL care.
Lundqvist,
Nilstun,
& Dykes
(2003)
Descriptive
survey
To examine neonatal
practice before birth,
at birth, and during
dying/after death
of neonate.
32 of 38 NICUs
(Sweden)
76% parents visited NICU after
prenatal diagnosis.
40% parents at risk for preterm
birth visited a preterm neonate in the
NICU and met the neonate’s family.
54% offered consultation after parents
informed of fetal impairment.
Majority of units encouraged parents
to touch and hold neonate and
participate in discussions about
medical treatment. Expected
parents to be with dying neonate,
collected neonatal mementoes,
and did follow-up visit.
75% informed parents about
withdrawal of treatment.
60% emphasized withdrawal
treatment was physician’s
decision, but parents could wait
for relatives to be present
(Continued)
32 The Journal of Perinatal Education | Winter 2010, Volume 19, Number 1
TABLE(Continued)
Authors Study Design Purpose Sample Findings
McHaffie,
Lyon, &
Hume
(2001)
Descriptive
qualitative
To explore parents’
perceptions of treatment
withdrawal/withholding.
108 parents of
62 neonates
(Scotland)
56% of parents decided to
stop treatment.
Some parents wished they had
taken responsibility.
One parent felt guilt 3 months
after the event.
Factors that minimized doubt were
full and honest information and
concrete evidence of a poor
prognosis.
Moseley
et al.
(2004)
Retrospective
chart
review
To determine if there are
differences in choices
made by African
American and White
parents’ EOL
decision-making.
38 infant charts
(United States)
80% of White parents agreed to
limit life-sustaining medical
treatment compared
to 62% African American parents.
Pierucci,
Kirby, &
Leuthner
(2001)
Retrospective
chart
review
To describe EOL care for
infants and analyze
palliative care
consultations.
196 infant deaths
(United States)
13% of families had palliative care
consultations, resulting in fewer
medical procedures and more
supportive services for
infants/families.
Rini & Loriz
(2007)
Descriptive
qualitative
To determine presence
and role of anticipatory
mourning, and to
describe parental
themes.
11 parents sustained
the death of a child
during the child’s
hospitalization
8 of the children died
in the PICU, and
2 died in the NICU
(United States)
Unsupportive health-care team that was
ill prepared to deal with the
impending death of a child.
Themes emerged: (1) giving information
to parents; (2) impact of attitudes
and actions of health-care
professionals; (3) physical presence
with the dying child; (4) location of
the child’s death; (5) issues of
hospital policy, procedures, process,
and rules; (6) existence of anticipatory
mourning and its relationship
with bereavement.
Streiner,
Saigal,
Burrows,
Stoskopf, &
Rosenbaum
(2001)
Descriptive
quantitative
To compare the attitudes of
neonatologist, neonatal
nurses, and the parents
of ELBW infants
toward saving infants
of borderline viability
and who should be
involved in the
decision-making process.
169 parents of ELBW
infants
123 parents of term
infants
98 neonatologists
99 neonatal nurses
(Canada)
Physicians recommended all life-saving
interventions at earlier gestation
than nurses.
64% of parents agreed an attempt
should be made to save all infants,
compared to 6% of health-care
professionals.
Majority believed that parents should
have the final say regarding
treatment of infant.
63% of physicians and 75% of nurses
cited economic costs related to
caring for ELBW infants.
84% of health-care professionals
agreed attitudes of parents were
important and thought it unethical
to save infants with potentially
severe disabilities.
(Continued)
End-of-Life Care in the NICU | Eden & Callister 33
condition at birth, compared to only 6% of health-
care providers. Reasons given included parental re-
ligious beliefs, belief in the sanctity of life, and the
belief that infants should be given a chance to live
because the outcome is uncertain. Daily NICU costs
exceed $3,500 per infant; a prolonged stay com-
monly costs up to $1 million (Muraskas & Parsi,
2008). This expense does not include the cost to care
for a child with severe disabilities after discharge
from the hospital. In Streiner et al.’s (2001) study,
health-care providers who did not believe all infants
should be saved cited economic costs incurred upon
society in having to care for these infants and lifelong
stress imposed on the family due to potentially se-
vere disabilities of their infant. The most appropriate
decisions about care combine the professional exper-
tise of health-care providers with the parents’ values
to determine the infant’s best interests (Ward, 2005).
Streiner et al. (2001) found that an overwhelm-
ing majority of health-care providers in their study
believed parents should have the final say in their
infant’s care. In other studies, participation of par-
ents in the decision to stop life-sustaining support
was between 75% and 92% (Abe et al., 2001; Arlettaz
et al., 2005; Lundqvist et al., 2003). When parents
felt they had personally made the decision about
treatment, they described the physicians as guiding,
supporting, or recommending a course of action.
When parents believed the physicians had made
the decision, the parents perceived them to be care-
fully listening to the parents’ views as they assessed
the option to continue or withdraw treatment
(McHaffie et al., 2001).
There are situations, however, where the parents
do not feel involved or supported in their decision to
maintain treatment. In the study by Arlettaz et al.
(2005), one set of parents did not agree with the phy-
sician to withdraw treatment right away because
they were waiting for family members to arrive; how-
ever, treatment was withdrawn anyway. The parents
were told it was for the best interest of the baby. In
this situation, the parents had accepted the need to
withdraw support; however, they disagreed with the
physician on when it should take place. A few days
after their infant’s death, the parents showed under-
standing and accepted the physician’s decision.
McHaffie et al. (2001) described parents in their
study who begged the health-care staff to do all they
could, with frequent replies from the staff implying
treatment was futile. However, the consultant re-
sponsible for the baby believed that he had further
discussed the issue with the parents, because it is the
health-care provider’s responsibility to ensure that
parents understand the information given them.
Discrepancies were found among different ethnic
groups as to whether the parents agreed to withhold
treatment. Moseley et al. (2004) found 80% of fam-
ilies of White infants agreed to limit life-sustaining
treatment, compared to 62% of families of African
American infants. Being involved in decisions for
their infant is extremely important to parents; how-
ever, not all parents want to make the ultimate de-
cision for their infant’s life or death.
McHaffie et al. (2001) found that 56% of the par-
ents in their study felt they had taken responsibility
for the decision to withdraw treatment. Reflecting
back 3 months after their decision, 83% believed
the decision had been made by the right person.
The parents who had doubts about their decision
cited their inability to assess the situation knowl-
edgeably and the lack of concrete evidence of a poor
prognosis. Leaving the decision strictly to the par-
ents may leave them with a lifelong burden of guilt.
Parents feel they have made the right decision if
they see deterioration in their infant, acknowledge
the prospect of suffering, receive clear information
TABLE(Continued)
Authors Study Design Purpose Sample Findings
Wocial
(2000)
Descriptive
qualitative
To explore parents’
perception of their
experiences in the
NICU when faced
with withholding/
withdrawing
treatment from
their infants.
20 parents whose infants
received NICU treatment
(United States)
Parents felt involved in the decision when
clear, accurate, and timely exchange of
information was given to them.
Trust between parents and providers
promoted confidence in parents about
information received and the
decision reached.
Care of providers promoted trust in
the parents.
Note. ELBW ¼ extremely low birth weight; EOL ¼ end of life; NICU ¼ newborn intensive care unit; PICU ¼ pediatric intensive care unit.
34 The Journal of Perinatal Education | Winter 2010, Volume 19, Number 1
about the condition of their infant, and accept
a poor prognosis (McHaffie et al., 2001; Rini &
Loriz, 2007; Wocial, 2000).
An extremely premature infant or an asphyxiated
term infant has a ‘‘clinical honeymoon’’ that usually
ends by the third day of life (Muraskas & Parsi,
2008, p. 656). A ‘‘clinical honeymoon’’ refers to in-
fants who are stable, with minimal need for respi-
ratory assistance and medications. It is important
for parents to understand this condition as they
make decisions for their child’s care. Detailed infor-
mation explaining an infant’s prognosis is critical in
helping parents prepare for the death of their child.
A study in Switzerland found the decision to with-
hold treatment is generally not based on the prob-
ability of survival but on the probability of survival
without severe disabilities (Arlettaz et al., 2005).
Rini and Loriz (2007) found that 64% of the parents
in their study would have done things differently
had they known that the death of their child was im-
minent. Good communication between the health-
care provider and the parents is essential when
making end-of-life decisions (McHaffie et al., 2001).
If parents perceive the health-care providers as car-
ing, they are more likely to trust the information
given to them about their infant (Rini & Loriz,
2007; Wocial, 2000). To be involved in decisions,
parents need consistent updates on their infant’s
status and care. In the NICU, parents receive up-
dates on the phone, at the bedside, and in care con-
sultations with health-care providers.
Palliative Care and Decision Making
Neonatal palliative care includes bereavement sup-
port for the family after the infant’s death but begins
with care for the living infant (Gale & Brooks, 2006).
In the NICU, palliative care conferences take place
before the infant’s birth, during the infant’s stay in
the NICU, and after the infant’s death. Lundqvist
et al. (2003) found that in 40% of the units they
studied, parents were invited to visit the NICU after
ultrasound findings indicated the fetus was suffering
from severe disease. Parents at risk of preterm birth
were invited to see a preterm infant and to meet the
family of the infant.
Palliative care conferences assist parents in mak-
ing decisions about treatments their infant may
receive (Carter & Guthrie, 2007; Gale & Brooks,
2006; Pierucci et al., 2001). Pierucci et al. (2001)
noted that, in their study, the NICU infants whose
parents had palliative care consultations had fewer
resuscitation attempts and more withholding of
mechanical ventilation and cardiac medications
than infants whose parents did not have consulta-
tions. Fewer blood draws, central lines, endotracheal
tubes, and feeding tubes were used when parents
participated in a palliative care conference. Pierucci
et al.’s (2001) findings suggest palliative care confer-
ences result in fewer treatments for the infant and
better support for the parents.
Parents are often encouraged or expected to be at
the bedside of their infant at the time of withdrawal
of life-sustaining treatment. In several studies, par-
ents were encouraged to touch and hold their infant
and, in the majority of cases, the infant died in the
parents’ arms (Abe et al., 2001; Carter & Guthrie,
2007; Lundqvist et al., 2003; Pierucci et al., 2001).
Rini and Loriz (2007) reported all the parents in
their study expressed a similar sentiment: Being
physically present and able to participate in the care
of their infant was extremely important in the expe-
rience of anticipatory mourning. Active participa-
tion in the care of their infant fostered a sense of
control and facilitated preparation for the event
of death. In some studies, bereavement support
was engaged more often in NICUs where palliative
care standards were used; however, specific docu-
mentation of the types of emotional support given
by physicians and nurses to the parents was lacking
(Abe et al., 2001; Carter & Guthrie, 2007; Pierucci
et al., 2001). In some cases, mementoes of the infant,
such as hair, armbands, hand molds, pictures, and
hats, were collected and provided to the parents to
assist with bereavement (Abe et al., 2001; Carter &
Guthrie, 2007; Lundqvist et al., 2003; Pierucci et al.,
2001).
Parents’ Perceptions of Withdrawing Treatment
In the reviewed studies, parents described the atti-
tudes and actions of hospital staff members as
having a profound and lasting effect on their expe-
rience surrounding the loss of their child (Rini &
Loriz, 2007; Wocial, 2000). One parent stated,
‘‘These are the last memories, sometimes the only
memories that we are going to have of our children’’
(Rini & Loriz, 2007, p. 276). The parents remem-
bered the people who were with them during the
extremely difficult and emotionally stressful time
of their child’s death. If the parents perceived the
hospital staff as compassionate, sensitive, and intu-
itive to the parents’ needs, they recalled the experi-
ence in a favorable manner. If the parents perceived
that staff was negative, routine, and callous, they
reported that the staff’s behavior negatively af-
End-of-Life Care in the NICU | Eden & Callister 35
fected their mourning process (Rini & Loriz,
2007).
Parents identified nurses as central figures in help-
ing them assume parental roles (Wocial, 2000). Inter-
ventions that assisted parents to feel involved were
encouraging the parents to hold the infant, encour-
aging parents to help with routine cares, and talking
to parents about the infant as a person, not the in-
fant’s medical condition. Having parents hold their
infant had the ultimate effect of moving forward the
decision to withhold treatment.
Many parents suggested having a health-care
professional who is trained in end-of-life care to de-
scribe in detail what the death experience was going
to look, feel, and be like (Rini & Loriz, 2007). Staff
members who were knowledgeable in end-of-life
care facilitated parents’ bereavement after the death
of their child.
DISCUSSION
Implications for Clinical Practice
Health-care providers must establish a strong rela-
tionship with parents of infants in the NICU. This
relationship is built on good communication and
trust (Ward, 2005). When health-care providers
show compassion and manifest caring behaviors
for the infant, parents are more likely to trust the
information given them. Trust allows parents to
move forward with decisions about care for their
infant, feeling confident that they are making the
right choice (McHaffie et al., 2001; Rini & Loriz,
2007; Wocial, 2000). To assist parents with their de-
cision, palliative care conferences are helpful in ed-
ucating parents about the condition and expected
outcome of their infant.
Palliative care ‘‘incorporates symptoms manage-
ment for the infant, and emotional, psychosocial,
and spiritual support for the infant and family
members’’ (Kenner & McSkimming, 2006, p. 960).
Studies reviewed show that palliative care assists
parents throughout their experience in the loss of
their child. Because many infants die prior to birth
or in the neonatal period, health-care providers are
encouraged to integrate palliative care into preg-
nancy and the immediate newborn period, which
is ‘‘the antithesis of what most of us expect to pro-
vide to newborns. Yet it is a vital part of her [the
mother’s] neonatal skills’’ (Kenner & McSkimming,
2006, p. 962). Families may have a limited amount
of time with their infant; prenatal palliative care em-
phasizes the importance of planning for the experi-
ence of losing an infant (Sumner et al., 2006).
Palliative care conferences can be held prenatally
and throughout the infant’s stay in the NICU. Early
introduction of palliative care may ease transition
for families from curative to palliative modes of
treatment (Romesberg, 2007). Himelstein (2006)
recommended palliative care programs be child-
focused, family-oriented, and relationship-centered.
Pain and nonpain symptoms management must be
addressed, as well as support for siblings. Siblings
may feel abandoned while parental/family attention
focuses on the ill infant.
An exemplary palliative care program is the
‘‘Footprints Program’’ implemented at SSM Cardi-
nal Glennon Children’s Medical Center in St. Louis,
Missouri. The mission of the Footprints Program is
to help children and their families to live well along
their journey, regardless of the site of care. The
NICU and the Footprints team allow families to
make positive memories of their child’s life. The
Footprints Program organizes a team of physicians,
nurses, and chaplains to meet with parents and make
plans for the infant. If the parents want to take the
infant home, the team will facilitate what is needed
to fulfill the parents’ decision. The Footprints staff
contacts all the care providers who will be involved
in the infant’s care after the infant is home (e.g.,
home health and emergency medical services). The
local police department is notified of the infant’s ill-
ness and that the infant is not expected to live. The
Footprints team stays connected with the family
through follow-up phone conversations during the
infant’s life and after death. The example of the Foot-
prints Program, and the positive outcomes of palli-
ative care reported in the research, may encourage
health-care providers to establish a palliative care
program in their NICU.
The Palliative and End of Life Task Force at St.
Jude Children’s Research Hospital is another exam-
ple of a palliative care program implemented for the
care of infants and children. The task force involves
parents in the decision-making process from the
moment they arrive at St. Jude Hospital. Palliative
care at St. Jude begins from the moment of diagno-
sis until the patient is cured or until end of life. The
goal is to alleviate pain and suffering. The St. Jude
Palliative Care Initiative (2005) offers an organized
method to address the spiritual, physical, and emo-
tional aspects of the child and family. Currently,
a global movement is underway toward the imple-
mentation of palliative care for newborns and chil-
dren, which is a new care concept in many countries
(Callister, 2007).
To learn more about theFootprints palliative careprogram at SSM CardinalGlennon Children's MedicalCenter, visit www.footprintsatglennon.org
36 The Journal of Perinatal Education | Winter 2010, Volume 19, Number 1
Nurses play a key role in supporting the parents
during their infant’s end-of-life care in the NICU
(Wocial, 2000). According to Fegran, Fagermoen,
and Helseth (2008), partnerships between parents
and nurses in the NICU develop in three phases:
acute critical phase, stabilizing phase, and discharge
phase. The stabilizing phase is the most difficult
because parents need a trusting relationship estab-
lished with their primary nurses. During this stage,
nurses purposely withdraw from the parents to fa-
cilitate the parents’ independence as caretakers. It is
important for parents and nurses to acknowledge
the need for detachment to facilitate closing the par-
ent-nurse relationship.
As the parents in Rini and Loriz’s (2007) study
suggested, it is helpful if NICU nurses have received
end-of-life education to properly support families
of infants they are caring for. Because NICU nurses
are likely to care for a critically ill or dying infant,
education on how best to teach parents about the
care their infant is receiving and/or end-of-life ed-
ucation may be considered as part of orientation for
all NICU nurses. This education would increase
the nurse’s comfort level when faced with the chal-
lenge of caring for a dying infant and providing pal-
liative and end-of-life care. According to a recent
study, NICU nurses recommend an inclusive team
approach, including the parents, when caring for
terminally ill neonates who may have a do-not-
resuscitate order (Bellini & Damato, 2009).
Implications for Childbirth Education
Ward (2005) found the perceptions of appropriate
communication differ between parents and health-
care providers in the NICU setting. This difference
may leave parents with regret about decisions they
did not believe they influenced or fully understood.
Educating expectant parents on how to communi-
cate with their infant’s health-care provider may
facilitate more confident decision making for the
parents. If parents can learn to identify and voice
their concerns, misunderstandings, and beliefs,
health-care providers can provide information to
the parents based on the infant’s status and the par-
ents’ needs. Couples with a high-risk pregnancy
would greatly benefit from education about the
NICU and what to expect if their child is hospital-
ized in the unit.
Implications for Further Research
Moseley et al. (2004) found a discrepancy between
White and African American parents’ decisions to
withhold life-sustaining treatment for their infant,
which indicates a need for further studies with par-
ticipants of more diverse backgrounds. Additional
studies are warranted to properly assess the needs
of populations that represent diversity in ethnicity,
ethical outlooks, income level, education level, and
age of parents.
McHaffie et al. (2001) found some parents expe-
rience guilt over their decision to withdraw treat-
ment. Rapid progression of neonatal resuscitation
and the increasing complexity of the ethical di-
lemmas to treat infants with very low birth weight
have made decision making difficult for parents and
health-care providers. The decision to withhold or
withdraw treatment raises questions about quality
of life and economic costs to society. Studies to eval-
uate guilt felt by parents after the death of their in-
fant are needed to prevent or assist parents with
their feelings of guilt or regret. McHaffie et al.
(2001) also found that some parents want to be
the primary decision maker for their infant, while
other parents prefer to leave the decisions to the
health-care providers. Further studies that examine
parents’ decision-making preferences may assist
health-care providers to identify and properly sup-
port parents’ needs in decision making.
Results from some of the reviewed studies sug-
gest detailed documentation for emotional support
given to parents by nurses and physicians in the
NICU may be lacking (Abe et al., 2001; Carter &
Guthrie, 2007; Pierucci et al., 2001). Because emo-
tional support for parents is a key component of
NICU care, future studies that examine documen-
tation of the specific types of emotional support
provided by NICU staff may give more insight into
the benefits and costs of providing emotional sup-
port. Additionally, further studies on end-of-life ed-
ucation for NICU staff and the benefits versus costs
for NICUs to provide this education for NICU staff
are warranted.
CONCLUSION
As advances in technology preserve the lives of very
low birth weight and critically ill newborn infants in
the NICU, ethical dilemmas regarding treatment
become more complex. Parents need to be closely
involved in the care and decision-making process
If parents can learn to identify and voice their concerns, health-care
providers can provide information based on the infant's status and
the parents' needs.
End-of-Life Care in the NICU | Eden & Callister 37
associated with their infant. Health-care providers
must provide parents with accurate information
to help them make decisions about the treatments
for their infant. To bolster parents’ confidence in
the information they receive, a relationship of trust
must be built between them and the health-care
provider. The parents’ trust is based on good com-
munication and the belief that the health-care pro-
vider truly cares about their infant. The experience
in the NICU is extremely difficult and stressful for
parents, and support throughout their infant’s stay
is imperative.
Study findings demonstrate palliative care and
end-of-life programs established in the NICU
improve parental support throughout the entire
course of their infant’s care and facilitate parents’
decision making. Support from the NICU staff is
important as parents face many challenges during
the difficult time of facing end-of-life care decisions.
Nurses also play a vital supportive role to parents
caring for their infant in the NICU and are a key
component in the parents’ grieving process when
end-of-life decisions are made. It is important for
NICUs to consider establishing a palliative care pro-
gram in their unit and to provide nurses with end-
of-life education.
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LACEY M. EDEN is a staff nurse in the Intermountain Healthcare
Urban South Newborn Intensive Care Unit in Provo, Utah, and
a recent graduate as a family nurse practitioner. LYNN CLARK
CALLISTER is a professor of maternal/newborn nursing at Brig-
ham Young University College of Nursing in Provo, Utah, and
a fellow in the American Academy of Nursing. She serves on
the March of Dimes Bioethics Council and the March of Dimes
National Nurses Advisory Council.
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